CAN YOU BECOME IMMUNE TO THE NECK BRACE?

[MJ]

I have been wearing the neck brace for a few months now, and I felt 75% better as soon as I put it on. However, I think it is losing it’s effects. I am in such a period of exacerbation with ALL of my symptoms (especailly PTSD), that the neck brace seems to be having very little or no effect at this time. I’m not even sure that it is helping with the pain. My stress levels are through the roof, I’m extremely irritable and I have also experienced rage. I believe it is because of the pressure in my head. Any advice (can’t get to the doc’s b/c of PTSD)?

[Dr. Diana]

I have been wearing the neck brace for a few months now, and I felt 75% better as soon as I put it on. However, I think it is losing it’s effects. I am in such a period of exacerbation with ALL of my symptoms (especailly PTSD), that the neck brace seems to be having very little or no effect at this time. I’m not even sure that it is helping with the pain. My stress levels are through the roof, I’m extremely irritable and I have also experienced rage. I believe it is because of the pressure in my head. Any advice (can’t get to the doc’s b/c of PTSD)?

Hi MJ,
I noticed after I reduced my intracranial pressure with Diamox, that after about 1-2 months, I just didn’t need the collar much any more. Are you on any medications yet? Diamox? Mast cell treatment? I agree with you that your intracranial pressure may be to blame for your symptoms. There’s a fair amount of research out there that would agree with that. Dr. Franz Schelling has researched a fair amount about this subject, and with what I learned about the effects the resulting inflammatory cytokines (from stress, trauma, viruses, etc) increasing inability to drain venous blood and CSF, I think you are spot on. I’m guessing that it is not an “immunity” to the collar, but an exacerbation of your intracranial pressure and thus your symptoms. Can you get some help getting to the doctor? I don’t know of much to help (beyond meditation, etc) to help until then. But music, meditation, etc CAN be of some help. Big hug…

[MJ]

Hi MJ,
I noticed after I reduced my intracranial pressure with Diamox, that after about 1-2 months, I just didn’t need the collar much any more. Are you on any medications yet? Diamox? Mast cell treatment? Can you get some help getting to the doctor?

I don’t have anyone to help me get to the doc. No contact with my family, not married & lost my friends due to depression/not functioning and not calling people back. I had about 3 hours of no neck pain the other day and I managed to go out and fax a letter to my Rheumatologist requesting that he read The Driscoll Theory Part 2. I have made it this far by myself…I will just have to suffer through it until my symptoms subside enough that I am able to get help. Once that happens, I can follow up with that doctor to see if he will read it or prescribe Diamox, H1 & H2. Dr. D, I am 100% convinced that the EDS is causing my PTSD, as per your theory. I know you did not specifically mention PTSD, but I believe it would fall within Mental Illnesses under Conditions Resulting from Poor Vagus Nerve Function (and CCSVI)in your Theory. I have gone through periods (even if only for a few hours) where I have no neck pain and thus no symptoms. When my neck is not sore and there is no pressure in my head, I do NOT have PTSD (and I do not have all the other symptoms like POTS, depression, etc) and I can function. Perhaps people’s personal life experiences contribute to how symptoms manifest. For instance, traumatic childhood=PTSD, positive up-bringing=high achiever, etc.? Thanks for your help. MJ

[Barbara]

Hello,
I’m new to the forum but not new to the condition (EDS, POTS, CCI, etc), which I have suffered the consequences of for the last almost 10 years, since I had a head an neck injury.

Having worn a collar since 2007 and tried several en-route to finding the best. This is my analysis, based on my experience:
2/10 Basic Soft collar – doesn’t cradle the head sufficiently to aid correct CSF flow.
4/10 Aspen collar – unfortunately doesn’t support the natural curve of the neck enough.
6/10 Johnson CTO (Metal Jacket)- excellent support for head but not neck which soon aches.
9/10 Philadelphia Collar – Excellent support for head and natural curve of the neck. It
maintains the head and neck in good relation to each other, aiding CSF passage
through the cranio-cervical junction (between head and neck). I had a gross
reduction of my symptoms from the first day I wore mine, some immediate, some
eventual. Point of note: You do need to wear collar linings with this one!!

Hope this helps, as it might not be the right type of collar that you are using, that’s all,
Regards
Barbara (UK)

[MJ]

9/10 Philadelphia Collar – Excellent support for head and natural curve of the neck. It
maintains the head and neck in good relation to each other, aiding CSF passage
through the cranio-cervical junction (between head and neck). I had a gross
reduction of my symptoms from the first day I wore mine, some immediate, some
eventual. Point of note: You do need to wear collar linings with this one!!

Hope this helps, as it might not be the right type of collar that you are using, that’s all,
Regards
Barbara (UK)

Hi Barbara.

Thanks for the info. Very helpful. I will look up the Pheladelphia Collar on line and give it a try. I have really been struggling for the last few weeks and I have to do something. The pressure and symptoms are so severe that I am experiencing A LOT of irritability, anger and even rage (which is scary). I have some really sore spots on the back of my head on the right side that radiate pain down my neck and right shoulder if I push on them. Right now they are sore even if I don’t touch them – maybe this is related to the rage.

Take Care,
MJ

[Barbara]

Hi MJ,
I wish you every success with the Philadelphia collar (heaven knows we need it!!) I did find that it cleared the occipital (back of head) pain, that I used to wake up with, straight away. I do have to sleep sitting up though as, even with the collar on, things start to go wrong if I’m horizontal for any length of time (as explained in Dr Diana’s Theory, part 2).

The annoying neck and shoulder pain that used to come and go (often) throughout the day, for which I seemed to be persistently wearing a ‘hot wheat bag’, went too. The arrhythmia’s (irregular heartbeats) calmed down, so did the fasciculations (wriggling and twitching under the skin) which weren’t as prolonged, as often, or as intense after wearing the collar – I did have to wear it 24 hours a day though. It appears very cumbersome at first but, for the long-term comfort it brings, it’s absolutely worth it, no contest!
Regards
Barbara
(UK)

[MJ]

Hi Barbara.

That’s interesting that you mention sleeping sitting up. I can’t keep my eyes open about mid-day and have to nap and I started to nap sitting up on the couch with the collar on. I noticed if I wasn’t horizontal, the tachycardia, burning up, SOB (shortness of breath), red & hot swollen toes, weakness and all the other crazy symptoms weren’t quite so bad after the nap.

Thanks again – this will be of great help until I can find a doctor that will read TDT Part 2. You mentioned you had a head and neck injury that made things worse for you. Can I ask what happened? I had a severe neck injury 24 years ago. I was skiing and wiped out on ice and my head whipped back so hard and hit the ice. I tore everything from my ear to my collar bone. I believe this ‘set everything in motion’ for me. I have POTS, EDS, Raynaud’s, opposite of Raynaud’s, PTSD, to name a few.

MJ

[Barbara]

Hello,
I’m new to the forum but not new to the condition (EDS, POTS, CCI, etc), which I have suffered the consequences of for the last almost 10 years, since I had a head an neck injury.

Having worn a collar since 2007 and tried several en-route to finding the best. This is my analysis, based on my experience:
2/10 Basic Soft collar – doesn’t cradle the head sufficiently to aid correct CSF flow.
4/10 Aspen collar – unfortunately doesn’t support the natural curve of the neck enough.
6/10 Johnson CTO (Metal Jacket)- excellent support for head but not neck which soon aches.
9/10 Philadelphia Collar – Excellent support for head and natural curve of the neck. It
maintains the head and neck in good relation to each other, aiding CSF passage
through the cranio-cervical junction (between head and neck). I had a gross
reduction of my symptoms from the first day I wore mine, some immediate, some
eventual. Point of note: You do need to wear collar linings with this one!!

Hope this helps, as it might not be the right type of collar that you are using, that’s all,
Regards
Barbara (UK)

Hi
Forgot to mention, I also have something called a ‘Headmaster’ collar, which is a lightweight, open-frame of a collar, made of fabric coated tubular metal (steel?) which, although it doesn’t cradle the head (other than at the chin) it does support the head somewhat and is better than no collar at all. I wear it for short periods, when my Philadelphia collar gets overbearingly warm, as it lets the air get at my skin (ideal for this hot summer weather we’re having in the UK) but I only wear it when I’m sitting still. It wouldn’t be any good for my CCI condition, if I was doing something more active and it certainly isn’t good enough to support me overnight.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!

[MJ]

Thanks for letting me know about the Headmaster. Appreciate it. I wanted the Philadelphia, but got talked into a Marlin Custom Rigid, because the height is adjustable, and sometimes when I can’t hold me head up I need my chin lowered. I don’t have it yet, as it is on order, but I’ll let you know how it goes! I have a feeling I may still need the Philladelphia.
Michelle

[Barbara]

Hi Barbara.

That’s interesting that you mention sleeping sitting up. I can’t keep my eyes open about mid-day and have to nap and I started to nap sitting up on the couch with the collar on. I noticed if I wasn’t horizontal, the tachycardia, burning up, SOB (shortness of breath), red & hot swollen toes, weakness and all the other crazy symptoms weren’t quite so bad after the nap.

Thanks again – this will be of great help until I can find a doctor that will read TDT Part 2. You mentioned you had a head and neck injury that made things worse for you. Can I ask what happened? I had a severe neck injury 24 years ago. I was skiing and wiped out on ice and my head whipped back so hard and hit the ice. I tore everything from my ear to my collar bone. I believe this ‘set everything in motion’ for me. I have POTS, EDS, Raynaud’s, opposite of Raynaud’s, PTSD, to name a few.

MJ

Hi MJ,
1. Sure, that’s the same way I found out that I needed to sleep sitting up, in order to lessen the symptoms. I don’t fully understand the mechanisms but Gravity plays it’s part.

2. Regarding my fall, I fell swiftly backwards on a slippery path, which accelerated the fall. I fell at an angle and on the way down, about 12-15″ off the floor, I hit a stone window-sill with the back bottom of my head, at the right hand side. This forced my head sharply into flexion and twisted my neck to the left as I continued to fall. I then hit the left hand side of my head on the floor as I landed, but not half as severely, though it was a sort of double whammy. I heard my neck crunch in between the two impacts too but my memory erased this fact for several years after and I only remembered it, as I was constructing the drawings, when it came back as clear as day!

It felt like I’d knocked my head off my shoulders at the time and my head was sort of ‘hung’ with my chin forwards. It was 5 years later before I finally got referred to the Spinal Injuries Unit and they put me in a Philadelphia Collar and brace, which made a BIG difference to my symptoms. This held my head in a much better position to my neck, allowing better flow of CSF. Some symptoms were alleviated immediately, some took a much longer time but I believe the body is a marvellous piece of engineering and, if you give it the right environment, it will do it’s best to recover itself.

I’ve still a long way to go, I thought I’d got ‘as good as it gets’ but, having discovered the Driscoll Theory, which makes Sooo much sense to me, this has given me great hope for the future.
Regards
Barbara
(UK)
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!

[Sunshine]

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